Symptom Free Tapering: I am never totally symptom... - PMRGCAuk

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Symptom Free Tapering

gtate1914
gtate1914

I am never totally symptom free, but yet I read that you must be before tapering. I always have niggles or light headache lasting seconds or maybe a little stronger, achy eyes/temples at times, a little stronger and lasting usually seconds. But never do I have a day that I am totally symptom free. Of course there is the daily fatigue and weariness that goes along with the territory. Do the rest of you put up with niggles and light head/temple achiness when you taper?

26 Replies
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I forgot to mention I have both PMR and GCA.

Hi Gtate this is my issue too. How do you know? I am always in some pain I have fibromyalgia too. I cannot begin to sort this out but I am just doing the best I can. I guess a guideline is, are you in severe pain? I just don't know. x

DorsetLady
DorsetLadyPMRGCAuk volunteer

At higher doses no I didn’t, but I think that’s because I was lucky in that my initial doses really got a grip of my GCA. I did have aches at lower doses, but it wasn’t GCA.

I never had PMR but I think that is more problematical in that your aches/pains are more widespread and not so well controlled at lower doses.

Obviously it’s ideal to be painfree before reducing, but not everyone has that luxury I know. Sure those with PMR will advise.

gtate1914
gtate1914 in reply to DorsetLady

I started on 60mg on Feb 28. Am at 47.5mg now. Pathetic. Am experiencing all the symptoms listed above. You're right, its hard to sort it all out. I envy all of you that are under 20mg.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to gtate1914

Don’t worry, you will get there, but in your time!

Don’t concern yourself that’s others may be doing it quicker, I didn’t, go your own pace.

gtate1914
gtate1914 in reply to DorsetLady

Thanks. We need all the encouragement we can get.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to gtate1914

I know, that’s why I’m still here! Nearly 2 years in remission, just to show it can be done.

PMRpro
PMRproAmbassador

I know one person who says you must be symptom-free before tapering. What he means is HE must be symptom-free before tapering. He is very lucky and while there are some who are next to symptom-free, the vast majority are not. If they waited for that they would never taper at all.

The level of freedom from symptoms you achieve at the starting dose is a good guide - and after that you should never be worse at the end of a taper than you were at the start. That takes into account things like fibro - it won't respond to pred - but not OA which may be much better at higher doses of pred but it does tend to reappear when you get to lower doses and does pose a problem differentiating.

I agree that PMR seems harder to work out than GCA - but all you have to worry about with GCA is whether it is a return of the symptoms you had at first or not. A GCA patient shouldn't really have PMR-type pain until well under 20mg - though I'm sure there are some who have problems. And you could well get PMR-type pain as a result of trying to drop too much in one go - steroid withdrawal is often called steroid withdrawal rheumatism!

I've been reducing by a half every two weeks from ten. Today I started eight. However I had an extra week at 8.5 because I seemed to be struggling. (Could be hitting the adrenals awakening). I am complying with doctor's wishes - but determined to control my own steroid destiny - hence listening to my body and taking this slowly. I have had aches, pains, niggles, insomnia and stiffening but overall I am coping. I have no idea if this is steroids, PMR flare or being a moany old bag.

PMRpro
PMRproAmbassador in reply to Pongo13

Much more likely to be one of the first 2 - in which case you are allowed to be the third!!!!!

Joydeck
Joydeck in reply to Pongo13

Reducing at the same rate, I tapered to 6.5 mg (split-dose) before I had a faint hint of pain in one shoulder. I spent the next week at 6.3 mg with mild bilateral pain coming and going, which suggests my pain was not steroid withdrawal. A week ago, I retreated to 7.5 mg and have weariness in the shoulders even now.

I'm much the wiser. At the first hint of pain, retreat 1 mg immediately and don't resume tapering until pain vanishes completely.

This is exactly my question. I have PMR and GCA and due to a recent flare I am at 60 mg prednisone. I like your word niggles - it captures the pressures, pains, tension in my temples, base of my skull and jaw. They are mild rather than acute and come and go.

Viola1
Viola1 in reply to Viola1

I’m unsure whether to increase another five or 10 mg just to see if I can have complete symptom relief. I was at 45 mg, down from 60 which is the highest ever been. I’m now back at 60 for 6 days. I appreciate this forum so much and have learned so much.

Hi gtate,

My experience of tapering and PMR has been that I was never

totally pain free and waltzing with daisies in my hair.

The fact remains that life continues to spool about us, and plain old arthritis, fibro, migraines, viruses, etc., will happen parallel to PMR and GCA.

To answer your question, During my 5 years with PMR, i dont recall many days when PMR was not a factor. Those times when I was physically pain free, I often experienced exhaustion and fatigue which interfered with my daily living. Other times, my Pred-head was such that I found it difficult to read anything more complex than silly "cozy" mysteries, which I devoured by the stack! It is getting better in this fifth year.

My mentors on this forum, PMRpro, DL, and the rest, helped me find my way through the maze of PMR, and continued to bring new information to the table as the years passed. The pearls of wisdom they shared have been corner-stones of my recovery, and continue to guide me even today.

Examples of those gems:

*** PMR is not life threatening, but it is life changing;

*** this is not a race to get off prednisone, but a challenge to find the level of pred that manages your symptoms;

***Prednisone does not cure PMR/GCA, it simply manages the inflammation while the disease continues to chug along behind the scenes;

The list is much longer, but my brain is needing more caffeine, so thats all for now.

Kind regards, Jerri

Dx:PMR, 2013, currently 5 mg pred

It sounds like you have a GCA diagnosis. To my mind it would depend on how far in you are, I mean how long have things been calm?

My diagnosis is PMR ( March 2016) and I am never really symptom free either but I did get to 7 mgs from 20 without a flare.

Diagnosed March 2 2018 re biopsy with GCA.

Went 8 days with only niggles, some light brief headaches/temple and behind eyes then started having stronger headaches/temple but certainly not unbearable. I panicked and upped dose to 50 from 45 which took care of any headache. Not sure I should have increased..... now to get back to 45..... tapering by 2.5mg.

But like I said, there is never a day that I don't have some niggles and or/light headaches lasting only seconds. I was curious if others had the same and it sounds like its fairly common to have these all the time.

gtate1914
gtate1914 in reply to gtate1914

On Aug 7 my CPR was 1 and my ESR 5.

This thread has been very enlightening for me.

I was diagnosed in October of 2016 with PMR by a rheumi that wasn't much interested in hearing my symptoms, I changed rhuemies and was told my symptoms were more in line with GCA or both but the official dx was never changed. I am now tapering 5.5/6 with the help of Actemra. I have those GCA niggles daily while the PMR niggles are only present when I over use my muscles. The other day, I even experienced jaw claudication while eating a salad that required lots of chewing! The headaches, temporal area and scalp tenderness,earaches, etc., are all fleeting, just like you describe. So, even though I feel much better on the Actemra than I did without it, and my CRP has gone down to normal range, clearly, the disease is still with me. I just hope the rheumi realizes that, too.

PMRpro
PMRproAmbassador in reply to Gaijin

If you are on Actemra the CRP WILL go down to normal range because that is what Actemra does. Monitoring of Actemra requires IL-6 estimation I believe. Actemra also does not cure the actual cause of GCA - it is a very expensive steroid sparer.

I was hoping Actemra WAS more than a steroid sparing agent.. Fingers crossed..but you are probably right again, and it IS just that.

I'm wondering something , PMRpro, are IL-6 levels decreased by prednisone at PMR dosis? I think I was tested for it sometime but it was normal. That was about 8 months in to steroid therapy , if I'm not mistaken.

I wonder if by the same token, prednisone normalizes levels of IL-6? I was tested for it about 6 months after starting on pred.

I was hoping Actemra was more than a steroid sparing agent.. I still have my fingers crossed.

HeronNS
HeronNS in reply to Gaijin

onlinelibrary.wiley.com/doi...

I thought Actemra's reason for being was to interfere with the mechanism which produces IL-6?

PMRpro
PMRproAmbassador in reply to HeronNS

It is - and that is why the only accurate monitoring for patients on Actemra is measuring IL-6.

But it stops the production of the IL-6 which is not necessarily the same as stopping the actual disease process and there is evidence that it may continue. There is also possibly more than one mechanism for causing GCA/PMR.

PMR2011
PMR2011 in reply to PMRpro

I believe Actemra prevents Interleukin6 from binding to its receptor which then prevents the IL6 from creating a substance which activates inflammation. Whew, that was a mouthful! So high IL6 levels while on Actemra likely mean the disease is still active and one should not taper it yet.

This is a bit technical but does explain:

ncbi.nlm.nih.gov/pubmed/186...

PMRpro
PMRproAmbassador in reply to PMR2011

Yes, I know. But the other point is that there may be more than one cytokine process involved in GCA - so even with low IL-6 the disease process may still be causing damage. And far too many doctors are monitoring CRP as the marker which is meaningless when the patient is on Actemra.

PMR2011
PMR2011 in reply to PMRpro

Yes, which leads us back to Symptoms rule! They did a Cytokine panel when I had my IL6 level checked. The good news, all the other interleukins and cytokines were normal. The IL6 was high which means my body is still hyper producing it (GCA disease) but it is unable to bind (the Actemra) to sites so my blood level rises. That’s how I know not ready to taper Actemra yet.

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